Digital Patient Education

and Decision Aids

Maria A. Lopez-Olivo, MD, PhD, Maria E. Suarez-Almazor, MD, PhD*

KEYWORDS
 Patient education  Decision aids  Digital tools  Multimedia tools
 Rheumatic diseases

KEY POINTS
 Patient education tools and decision aids can be developed and stored as digital data and
delivered electronically with video or audio players, computers, or mobile devices.
 Digital patient education and decision aids can be tailored to facilitate health decision
making and may benefit patient health outcomes.
 Digital patient education and decision aids should be based on evidence and must un-
dergo a rigorous development and testing process.

INTRODUCTION

Consumer-informed health decision making includes several elements: understanding

of the disease of interest; knowledge of related health care alternatives, including ben-
efits, risks, and uncertainties; consideration of individual preferences; participation in
decision making according to the role wanted to play (ie, passive, active, or collabo-
rative); and making a decision consistent with individual values.1,2 Shared decision
making is a subset of informed decision making, with health care providers and pa-
tients working in partnership to determine the course of care most aligned with pa-
tients’ values, which is the hallmark of patient-centered care. The Informed Medical
Decisions Foundation defines shared decision making as a “collaborative process
that allows patients (and families) and their providers (and the health care team) to
make health care decisions together, taking into account the best scientific evidence
available, as well as the patient’s values and preferences. It honors both the provider’s
expert knowledge and the patient’s right to be fully informed of all care options and the
potential harms and benefits.”3 The shared decision-making process offers patients

Disclosure Statement: None.

Funding/Support: None.
Section of Rheumatology and Clinical Immunology, Division of Internal Medicine, Department
of General Internal Medicine, The University of Texas MD Anderson Cancer Center, Unit 1465,
1515 Holcombe Boulevard, Houston, TX 77030, USA
* Corresponding author.
E-mail address: msalmazor@mdanderson.org

Rheum Dis Clin N Am 45 (2019) 245–256

https://doi.org/10.1016/j.rdc.2019.01.001 rheumatic.theclinics.com
0889-857X/19/ª 2019 Elsevier Inc. All rights reserved.
246 Lopez-Olivo & Suarez-Almazor

the help they need to make the best individualized care choices, while enabling rheu-
matologists to feel certain about their recommendations.4 A collaborative participation
of patients in the decision-making process has been shown to increase trust, enhance
realistic perceptions of risk and treatment expectations, improve clinical and patient-
reported outcomes, and increase satisfaction and treatment adherence.5,6 The first
step in this complex process is acquiring the knowledge that can support
preference-based and value-based decisions, which can be achieved through care-
fully developed evidence-based educational tools.

EVIDENCE-BASED PATIENT EDUCATION

There is a clear distinction between providing health information alone versus health
education. Whereas information refers to the delivery of health-related facts to pa-
tients, health education is more complex and encompasses a systematic instruction
that promotes an understanding on how to maintain personal health. Although patient
education materials can be extremely useful, they also can be counterproductive if
they include erroneous information, confuse the patient, or contradict consensus rec-
ommendations. For instance, imbalanced, poor-quality information about therapy
where only an overoptimistic view is presented may result in requests for interventions
that may not be suitable or in unexpected harms.7
Evidence-based patient education is the joint use of current medical best evidence
to inform patients about their health and management options.8 In 2008, the guidelines
of the General Medical Council defined principles for the content of evidence-based
patient education.9 Patients should be informed about their diagnosis and prognosis,
diagnostic uncertainties, management options, purpose of treatment and its potential
benefits, risks, and associated burdens; understand who the people are involved in
their care and their roles; and know their right to refuse treatment or seek a second
opinion. Patient health education also should be transparent. Details about the pur-
pose and sources of information and conflicts of interest should be provided.8 Addi-
tionally, evidence-based patient education should be tailored according to patients’
needs, wishes, and priorities; the nature of their condition; and the complexity of
the treatment and associated risks. Individuals make decisions with respect to health
issues according to how the problem and alternatives for solutions are presented to
them.10
A growing array of approaches is available to address patients’ educational needs
and to encourage them to actively participate in managing their health issues. Patient
education can improve knowledge; promote understanding of the disease (eg, prog-
nosis, risk factors, and harms and benefits of interventions); improve cognitive skills,
such as problem-solving and self-efficacy; and facilitate communication.11 Individual
knowledge, beliefs, and affects are brought to medical encounters and can influence
patient-provider interactions. In addition, external influences from family and social
networks also can play a role in health decisions. Health education should aim to
model patients’ expectancies of benefits and barriers, considering the various external
influences from health care providers and social environment, to enhance beneficial
behaviors, such as self-care and adherence, which can ultimately improve
outcomes.12

DECISION AIDS

Decision aids are tools to inform patients who want to actively participate in health de-
cision making and help them with explicit choices. These tools are most effective
when used together with the counseling of a health care provider. They provide
 Digital Patient Education and Decision Aids 247

information about a health condition using the latest quality-rated scientific evidence
and the options and outcomes regarding diagnosis and treatment of the condition and
help clarify patients’ personal values and understanding of the relative importance of
the benefits and risks of options.13,14
Decision aids are important for patients with rheumatologic conditions, who are
frequently asked to make complex decisions about their treatment. Often, the optimal
course may be uncertain, and individual preferences are central to decision making,
because factors, such as risk tolerance and symptom burden, may vary from person
to person. A recent review concluded that, compared with usual care, people who use
decision aids feel more knowledgeable and better informed about their values and
have more active roles in decision making.15 The review also demonstrated knowl-
edge improvement and correct risk perceptions when decision aids are used in prep-
aration or within consultations. Evidence suggests that these tools can be useful for a
variety of clinical purposes and topics.
To deliver health education or decision aids effectively to patients affected by
chronic conditions, it is important to understand their preferences with regard to their
health information–seeking behavior. A study exploring the preferences of people
living with different rheumatologic conditions for delivery methods of educational ma-
terial found that for patients, the preferred media for obtaining treatment information
were electronic media (televisions and DVDs) in their homes, doctors’ offices, or phar-
macy.16 The preferred messengers were patients with the same disease and rheuma-
tologists using real-life stories and testimonials, narrating both successful outcomes
and failures. Key message topics preferred by patients included healthy lifestyle
changes and benefits and consequences of medication adherence.16

DIGITAL PATIENT EDUCATION AND DECISION AIDS

The word, digital, describes items using binary digits (digital codes). When applied to
patient education and decision aids, it usually relates to media stored as digital data,
that is, software and platforms for teaching and learning that can be used with video or
audio players, computers, or mobile devices. Different types of digital consumer and
patient health tools are increasingly being developed to be delivered through elec-
tronic devices, such as computers and smartphones, as standalone software or
Web sites.
With the rapid development of the Internet, digital technology has become a con-
ventional method of health education for patients. It provides tremendous flexibility
for delivering health information because Web sites and a broad range of applications
can combine text, images, digital media such as audio and video, social networking
tools, online games, animation, risk calculators and other interactive and personalized
features that can help patients to think about their preferences and the role they want
to play during the medical encounter. These tools can be delivered at a time and place
that is chosen by an individual or a group of people simultaneously.

Advantages and Disadvantages

Digital patient education and decision aids bring new opportunities and challenges.17
If the summary of decisions taken or education delivered is integrated with the patient
electronic health record, data can be recorded longitudinally and reassessed and
enhanced to make changes as needed, which could improve efficiency in patient-
provider communications and better serve patient education needs. Because digital
tools can include interactive features added to traditional media, such as text,
graphics, or static images, and can be tailored individually, the information provided
248 Lopez-Olivo & Suarez-Almazor

may better satisfy the needs and literacy levels of different populations. Because dig-
ital tools offer the convenience of accessibility, individuals have the choice to consult
information almost anywhere, at any given time, and in relation to a topic of interest at
that time.17 Digital tools also can be visually appealing and entertaining and can
include storylines and interactive elements, and patients may be more likely to engage
cognitively and peruse and interpret the materials in their entirety compared with
pencil-and-paper tools.18
Provision of digital tools alone does not necessarily ensure improved communica-
tion between clinicians and patients about treatment alternatives. There are practical
barriers to using these tools, such as (1) providers resisting their use in practice
because of the time required, causing disruption to clinic workflows; (2) with tools
that are extensive, patients not taking the time to read or view them; and (3) tools
that are costly to develop and difficult to disseminate having limits to their accessi-
bility.19 In addition, digital tools may require a degree of technical and health literacy.
Poor health literacy has a disproportionate impact on patients with low education
levels, those who belong to minority groups, and those who are elderly.20 Individuals
with limited health literacy often lack knowledge about their disease or misunderstand
alternatives for treatment. Without this knowledge, they cannot participate in informed
decision making about their health care options.21–24 Studies in patients with rheu-
matic diseases have shown that those who had not completed high school had worse
disease states than patients who had completed high school and that a low education
level was a risk factor of premature death over a 10-year period.25,26 Digital tools are
commonly developed in English, containing data and navigation features that may be
difficult for individuals with inadequate literacy or non-English speakers. There are
scarce data on using digital patient education and decision aids in underserved
populations.27

Development standards
Digital patient education and decision aid development are multifaceted, generally
requiring prior theoretic and empirical groundwork.28 Because the use of digital pa-
tient education and decision aids may have an impact in patient outcomes, a rigorous
development process is required. Various instruments and checklists are available to
evaluate the quality of patient education and decision aids. These apply to both non-
digital and digital tools, although technical elements may be more relevant for the
latter.
Since the release of the General Medical Council guidelines, various checklists have
been developed to improve the quality of health patient information in general, adding
new features to be evaluated, including accessibility, readability, comprehensiveness,
design and layout, currency, strength of evidence, and relevance, among others.
Based on a systematic review, the quality evaluation criteria for patient health informa-
tion on the Internet should address 7 domains that are believed a minimum require-
ment: (1) accuracy (ie, information should be based on current guidelines or
standards of care), (2) completeness/comprehensiveness (ie, covering the main con-
cepts of the topic and subdivided to improve understanding), (3) technical elements
(eg, sources of information, sponsorship, target audience, and so forth), (4) readability,
(5) design and aesthetics (ie, elements to catch attention of visitors, such as layout,
font type and size, and so forth), (6) accessibility (ie, content that can be used by a
wide range of people living with disabilities), and (7) usability (ie, features to ease nav-
igation).29 Siddhanamatha and colleagues30 conducted a study in 2017 evaluating a
sample of health educational Web sites for rheumatoid arthritis and found that no
Web site covered all needed information (ie, epidemiology, pathogenesis, treatment
 Digital Patient Education and Decision Aids 249

and disease monitoring, complications, self-management, risks and benefits of treat-

ment, prognosis, treatment adherence, questions for patients to ask their doctors, and
costs). The authors also identified problems with the reporting of important develop-
ment information, such as when the content was last updated and the navigation
experience. Most importantly, the mean reading level of the Web sites was above
grade 12, which may render much of the information provided difficult to understand
for patients with low literacy.30
Currently, there are no standards for digital decision aids; however, various quality
evaluation criteria exist for decision aids in general, such as the International Patient
Decision Aid Standards Collaboration assessment checklist; Workbook on Devel-
oping and Evaluating Patient Decision Aids, which evaluates the development and
evaluation processes of decision aids; and Ensuring Quality Information for Patients,
which evaluates information quality.31–34 These instruments and checklists assess if
the decision aid (1) provides information in sufficient detail, (2) presents probabilities
in an unbiased manner, (3) includes methods to clarify values and preferences, (4) pro-
vides structured guidance for deliberation and communication, (5) presents informa-
tion in balanced manner, (6) uses a systematic development process, (7) uses up-
to-date evidence, (8) discloses conflicts of interest, (9) uses plain language, and (10)
ensures that the decision is informed and values-based. Furthermore, in 2016, The
National Quality Forum also published national standards for the certification of patient
decision aids.35 The set of performance measures assess the quality of shared deci-
sion making (Box 1).
Recently, a systematic review identified 6 features with different subcomponents
that can be integrated in computer-based decision aids: (1) content control, described
as the control a patient has over access to information, including navigation, clarity of
information, optional information, and access to external sources; (2) tailoring, defined
as the perception of the personal information received, including demographics, clin-
ical condition, values, preferences and belief, and knowledge deficits; (3) patient nar-
ratives, a feature that allows patients to reflect on experiences of others either by using
patient stories (with focus on personal experience) or behavior modeling (with focus on
process deliberation); (4) values clarification, which is a process that helps patients
examine personal values and preferences using decision points, notebooks, weighting
or trade-off exercises, social matching, or personal reflection; (5) feedback-entailed
interaction with the decision aid, including decision aid progress, knowledge, sum-
mary of preferences, optimal choice (using an algorithm/calculator), decisional consis-
tency, and printed summary of decision aid activity; and (6) social support, described
as encouraging patients to involve others in decision making, such as community sup-
port, integration of family, or facilitation of shared decision making; using questions for
physicians, summary of decision aid in electronic health record, or video coaching to
overcome physician communication barriers. The features found to improve the qual-
ity of decision making were content control, which allows patients to select the order,
level of detail, and type of information presented; values clarification exercises, such
as using notebooks to annotate the unclear topics or concerns, and trade-off exer-
cises; overall feedback—an exception being the use of decisional consistency, which
may give the impression that the initial decision was wrong and provoke negative
emotions; and social support. In contrast, tailoring and patient narratives were asso-
ciated with reduced quality of decision making.36
Given that the use of digital technologies for health education is rapidly evolving
field, quality evaluation criteria will likely progress to incorporate elements more
unique to digital tools, such as interaction, optimal navigation, and use in routine clin-
ical practice.
250 Lopez-Olivo & Suarez-Almazor

Box 1
Certifying criteria intended to assist in determining the level to which a decision aid facilitates
decision making

1. Provides a balanced presentation of options

2. Content is based on a rigorous and documented evidence synthesis method
3. Provides information about the evidence sources used
4. Provides key outcome probabilities, adopting risk communication principles
5. Provides a publication date
6. Provides information about the update policy and next expected update
7. Provides information about the funding sources used for development
8. Provides information about competing interests and/or policy
9. Provides information about the development process, including information about
participation from target users and health professionals
10. Provides information about user testing with target patients and health professionals
11. Reports readability levels
12. Follows plain language guidelines, to ensure understanding of people with low literacy
and/or low health literacy skills
Additional information required for screening and diagnostic tests
1. Describe what the test is designed to measure.
2. Describe next steps taken if a test detects a condition/problem.
3. Describe next steps if no condition/problem detected.
4. Describe consequences of detection that would not have caused problems if the screen were
not done.
5. Include information on the test’s positive predictive value.
6. Include information on the test’s negative predictive value.

Data from Data National Quality Forum. National Standards for the Certification of Patient
Decision Aids. Available at: https://www.qualityforum.org/Publications/2016/12/National_
Standards_for_the_Certification_of_Patient_Decision_Aids.aspx.

Examples in rheumatology The studies described in this article do not represent an

exhaustive review of this topic but rather are examples of controlled trials in different
diseases comparing different delivery methods of patient education materials and
decision aids. Although adding digital features may improve outcomes compared
with reading materials alone, increasing levels of complexity are not always
beneficial.
Increasingly, multimedia tools are being developed to provide health education to
patients with rheumatic disorders. Many of these tools include audiovisual compo-
nents, often with patient or clinician narratives, and they can incorporate storytelling
(telenovela format). These interventions can be delivered in external devices, such
as DVDs, or through the Internet. The authors have developed 3 multimedia video
tools for patients with rheumatoid arthritis, osteoarthritis of the knee, and osteopo-
rosis. The tools were designed to be didactic and entertaining, with simple navigation
and graphic user interfaces, provided in both English and Spanish languages. The
videos incorporate a series of soap opera segments depicting a main character
with the disease of interest, integrated with learning modules to provide patients
with factual information about their condition and treatment options, and also
including patient testimonials. After viewing the tool, most participants believed they
gained clarity on aspects related to disease course, symptoms, and the time
 Digital Patient Education and Decision Aids 251

medication takes to start acting; they were "encouraged to see their doctor regularly";
and they were more aware about taking their medications.37
A group randomized trial evaluated a 13-minute video that included patient stories
related to their experiences with nonsteroidal anti-inflammatory drugs (NSAIDs),
related adverse effects, and the importance of patient-provider communication.38
The primary outcomes were the proportion of patients who spoke with their
physician about NSAIDs used and their risks. The results showed that this interven-
tion, primarily including patient stories, did not increase patient-physician
interactions.
Several studies also have been conducted to evaluate multimedia and digital
tools in patients requiring bone health care. This is an important area, because
it has been extensively documented that rates for osteoporosis screening and
treatment are universally low, despite well-publicized national guidelines.39,40
Two parallel, group-randomized, controlled trials were conducted to evaluate
the effectiveness of 2 interventions designed to increase appropriate dual-energy
x-ray absorptiometry (DXA) and osteoporosis treatment in women greater than or
equal to 65 years old.41 Participants were allocated to 3 groups, each with a
different strategy: (1) a system that permitted individuals to schedule their
own DXA; (2) the self-schedule strategy combined with education that included a
video containing narrative storytelling and written information to encourage pa-
tients to schedule a DXA and to encourage communication with their providers;
and (3) a control group in which individuals needed to obtain authorization to
schedule a DXA. The investigators concluded that DXA uptake was greater in the
intervention groups compared with the usual care group; however, the addition
of educational material to the self-schedule strategy did not provide a greater
uptake.
A subsequent study by this group evaluated a multimodal intervention delivered via
Internet and a DVD with relevant information for postmenopausal women with prior
fracture.42 The intervention incorporated print and audiovisual components (ie, patient
narratives) and contained information individualized to the barriers or concerns
expressed about osteoporosis management and readiness to behavior change. Inter-
active voice-response phone messages also were delivered to encourage viewing the
DVD. The investigators evaluated the determinants associated with online intervention
uptake. Patients providing an e-mail address were most likely to access the interven-
tion within 60 days. In contrast, a negative correlation was found with follow-up phone
calls; patients were less likely to interact with the intervention if they received the
phone reminders.
A study in patients with rheumatoid arthritis evaluated a Web-based decision sup-
port tool to inform patients with active disease about the risks and benefits of biologic
therapy. Options were presented with probabilistic estimations of outcomes. The tool
allowed patients to weigh attributes for explicit value clarification, and feedback was
provided, including the tool’s suggested optimal choice according to stated prefer-
ences.43 The results showed an increase in knowledge, willingness to take a biologic,
and informed value-concordant choices after completion of the tool. Recently, a Web-
based educational intervention with interactive components was developed to
educate first-degree relatives of patients with rheumatoid arthritis about their risk fac-
tors for developing this disease. The tool included a personalized risk estimator on the
basis of demographics, genetics, autoantibodies, and behaviors.44 The tool was suc-
cessfully implemented and evaluated in a randomized controlled trial. Participants
receiving the tool had increased, long-lasting knowledge on risk factors than controls
after completion of the program.
252 Lopez-Olivo & Suarez-Almazor

Some studies in patients with rheumatic diseases have used more complex meth-
odologies to develop decision aids. Conjoint analysis is a marketing methodology that
is used to understand and aid in decision-making processes by determining how peo-
ple value different attributes at different levels, by measuring the stated preferences of
individuals.45 These interactive tools help people select and rank how they value
different attributes for a given product (in market research) or a health condition or
intervention (in health research). By engaging in this preference exercise, individuals
can compare and choose among multiattribute alternatives, in turn leading to an
explicit values clarification, which can aid in decision making. A 2007 randomized
controlled trial compared an Adaptive Conjoint Analysis (ACA) tool (Sawtooth Soft-
ware, Provo, Utah, USA) developed with a commercial software for the treatment of
knee pain with an informational pamphlet.46 The intervention was designed to increase
patient awareness of choices for available treatment options, including explicit values
clarification delivered via trade-off exercises and feedback through summary of pref-
erences, optimal choice, and a summary of the decision aid activity. The primary
outcome was decisional self-efficacy. Participants using the digital tool trusted
more in their ability to get information about existing options, felt better prepared to
participate in their visit, and were more confident in managing their arthritis compared
with patients receiving the information pamphlet only. A subsequent study by the
same group compared 2 surveys in patients with knee pain, which described attri-
butes related to pain, energy, route of administration, stomach upset, bleeding ulcer,
and cost.47 In the first survey, participants were presented all attributes and chose the
most important one. In the second survey, they rated the importance of the remaining
attributes relative to the one they had chosen to be the most important one. Both sur-
veys performed well. Explicit value clarification tools can be valuable tools, which are
easier to present in digital formats and can be incorporated in digital decision aids to
elicit patient preferences and facilitate medical decision making.
The authors conducted a randomized controlled trial using adaptive conjoint analysis
with the same software, this time in patients with osteoarthritis of the knee, to aid them
in decision making related to total knee replacement.48 Patients were randomized to
receive 1 of the following: (1) educational booklet; (2) educational booklet combined
with video booklet; or (3) educational booklet 1 video booklet 1 conjoint analysis ex-
ercise. The primary outcome was decisional conflict. Although all groups had a reduc-
tion in decisional conflicts, the largest reduction was observed in the group watching
the video booklet, indicating that adding a more complex digital values clarification ex-
ercise did not increase the potential benefit of the educational tools. A qualitative study
in a subset of this study group identified the concerns that elderly patients had using the
conjoint analysis tool: some were confused by the series of comparisons, others
believed the software did not adequately reflect the preferences expressed during its
use, and many felt overwhelmed by the number of choices they were given.49
Although less studied than other features/components of digital patient education
and decision aids, social support can be an important source of health information
and can aid in decision making. A pilot randomized controlled trial evaluating a peer
mentoring program through video chat application [or software] for adolescents with
juvenile idiopathic arthritis found that participants’ mean engagement level with the
program was 8.5 of a maximum of 10. Participants who completed the program
improved in their perceived ability to manage the disease compared with controls.50
The authors recently completed a randomized controlled trial that compared patients
with rheumatoid arthritis assigned to participate in a closed Facebook community,
with guidance from an experience patient moderator, with patients who did not partic-
ipate in the community and only had access to an educational Web site.51 Although no
 Digital Patient Education and Decision Aids 253

differences were observed in gains in knowledge or self-efficacy, patients partici-

pating in the Facebook community reported increased satisfaction in peer support
compared with nonparticipants.

SUMMARY

For many rheumatic conditions, decisions can be difficult both emotionally and cogni-
tively, often including more than one clinically appropriate option, resulting in choices
driven by personal values and preferences. A first step in decision making is knowl-
edge of the available options and clear understanding of the relevant benefits, harms,
and contextual factors associated with each alternative.
Over the past decade, patient education tools have been gradually moving toward
digital platforms with preference toward the online, computer-based environment. The
content provided in digital tools must conform to the highest standards of scientific
accuracy, must be tested for comprehensibility and relevance, and adhere to national
standards. Selecting evidence-based digital patient education, however, is not suffi-
cient. It is equally important to know how and when the digital tool is presented to a
patient.
Decision aids help patients engage in decision-making processes by providing the
best available evidence of potential harms and benefits for different alternatives, so
they can make informed, values-based decisions with their health care providers. Suc-
cessful implementation of digital shared decision-making tools is complex and de-
pends on key factors, such as a patient’s health literacy, available evidence on the
health topic of interest, and clinic-related issues (eg, time and competing priorities
in the consultation).52
Finally, patient involvement in the development process of educational and decision
tools is essential to ensure relevant content and usability. These issues will influence
the potential benefit and satisfaction with the tool.

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